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A Focus Group Study of Self-Management in Patients With Glomerular Disease.
Carter, Simon A; Teng, Claris; Gutman, Talia; Logeman, Charlotte; Cattran, Dan; Lightstone, Liz; Bagga, Arvind; Barbour, Sean J; Barratt, Jonathan; Boletis, John; Caster, Dawn J; Coppo, Rosanna; Fervenza, Fernando C; Floege, Jürgen; Hladunewich, Michelle A; Hogan, Jonathan J; Kitching, A Richard; Lafayette, Richard A; Malvar, Ana; Radhakrishnan, Jai; Rovin, Brad H; Scholes-Robertson, Nicole; Trimarchi, Hernán; Zhang, Hong; Azukaitis, Karolis; Cho, Yeoungjee; Viecelli, Andrea K; Dunn, Louese; Harris, David; Johnson, David W; Kerr, Peter G; Laboi, Paul; Ryan, Jessica; Shen, Jenny I; Ruiz, Lorena; Wang, Angela Yee-Moon; Lee, Achilles Hoi Kan; Ka Shun, Samuel Fung; Ka-Hang Tong, Matthew; Teixeira-Pinto, Armando; Wilkie, Martin; Alexander, Stephen I; Craig, Jonathan C; Martin, Adam; Tong, Allison.
Afiliación
  • Carter SA; Sydney School of Public Health, The University of Sydney, Sydney, Australia.
  • Teng C; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
  • Gutman T; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
  • Logeman C; Sydney School of Public Health, The University of Sydney, Sydney, Australia.
  • Cattran D; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
  • Lightstone L; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
  • Bagga A; Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
  • Barbour SJ; Toronto General Research Institute, Toronto, Ontario, Canada.
  • Barratt J; Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, UK.
  • Boletis J; Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India.
  • Caster DJ; Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
  • Coppo R; Department of Cardiovascular Sciences, University of Leicester, Leicester, UK.
  • Fervenza FC; John Walls Renal Unit, Leicester General Hospital, Leicester, UK.
  • Floege J; Nephrology Department and Renal Transplantation Unit, Medical School, University of Athens, Laiko Hospital, Athens, Greece.
  • Hladunewich MA; Division of Nephrology, University of Louisville, Louisville, Kentucky, USA.
  • Hogan JJ; Fondazione Ricerca Molinette, Regina Margherita Hospital, Turin, Italy.
  • Kitching AR; Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota, USA.
  • Lafayette RA; Department of Nephrology and Clinical Immunology, RWTH University Hospital, Aachen, Germany.
  • Malvar A; Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
  • Radhakrishnan J; Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
  • Rovin BH; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
  • Scholes-Robertson N; Department of Nephrology, Monash Health, Victoria, Australia.
  • Trimarchi H; Centre for Inflammatory Diseases, Monash University Department of Medicine, Victoria, Australia.
  • Zhang H; Stanford University Medical Center, Stanford, California, USA.
  • Azukaitis K; Department of Medicine, Division of Nephrology, Stanford University, Stanford, California, USA.
  • Cho Y; Nephrology, Hospital Fernández, Buenos Aires, Argentina.
  • Viecelli AK; Columbia University Irving Medical Center, New York, New York, USA.
  • Dunn L; Department of Internal Medicine, Division of Nephrology, The Ohio State University Wexner Medical Center, Columbus, Ohio, USA.
  • Harris D; Sydney School of Public Health, The University of Sydney, Sydney, Australia.
  • Johnson DW; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
  • Kerr PG; Nephrology Service and Kidney Transplantation Unit, Hospital Britanico de Buenos Aires, Buenos Aires, Argentina.
  • Laboi P; Renal Division, Peking University First Hospital, Beijing, People's Republic of China.
  • Ryan J; Clinic of Pediatrics, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania.
  • Shen JI; Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia.
  • Ruiz L; Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia.
  • Wang AY; Translational Research Institute, Brisbane, Australia.
  • Lee AHK; Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia.
  • Ka Shun SF; Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia.
  • Ka-Hang Tong M; Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
  • Teixeira-Pinto A; Westmead Institute for Medical Research, The University of Sydney, Sydney, Australia.
  • Wilkie M; Sydney Medical School, The University of Sydney, Sydney, Australia.
  • Alexander SI; Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia.
  • Craig JC; Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia.
  • Martin A; Translational Research Institute, Brisbane, Australia.
  • Tong A; Centre for Inflammatory Diseases, Monash University Department of Medicine, Victoria, Australia.
Kidney Int Rep ; 7(1): 56-67, 2022 Jan.
Article en En | MEDLINE | ID: mdl-35005314
ABSTRACT

INTRODUCTION:

Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular disease.

METHODS:

We conducted 16 focus groups involving adult patients with glomerular disease (n = 101) and their care partners (n = 34) in Australia, Hong Kong, the United Kingdom, and United States. Transcripts were analyzed thematically.

RESULTS:

We identified the following 4 themes empowered in autonomy (gaining confidence through understanding, taking ownership of disease and treatment, learning a positive health approach); overwhelmed by compounding treatment burdens (financially undermined and depleted, demoralized by side effects and harms, frustrated by fragmented and inflexible care, fear of possible drug harms); striving for stability and normalcy (making personal sacrifices, maximizing life participation, attentiveness to bodily signs, avoiding precarious health states, integrating medicines into routines); and necessity of health-sustaining relationships (buoyed by social support, fulfilling meaningful responsibilities, sharing and normalizing experiences, seeking a trusting and respectful alliance).

CONCLUSION:

Patients with glomerular disease and their care partners value their capacity for autonomy and disease ownership, stability of their health, and relationships that support self-management. Strategies directed at strengthening these factors may increase self-efficacy and improve the care and outcomes for patients with glomerular disease.
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Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Tipo de estudio: Prognostic_studies / Qualitative_research Idioma: En Revista: Kidney Int Rep Año: 2022 Tipo del documento: Article País de afiliación: Australia
Texto completo
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Tipo de estudio: Prognostic_studies / Qualitative_research Idioma: En Revista: Kidney Int Rep Año: 2022 Tipo del documento: Article País de afiliación: Australia